Anyone starting chemo in June 08

hunkydory

You hang in there Stickerlady.  I already know about acid reflux. That has been with me years before my diagnosis and take meds for it.  Bone pain is what I fear the most.  Have problems taking ibuprofen and aspirin which irritate my stomach even worse, so I hope I don't ache too bad.  I guess by keeping the (onc) informed should help throughout my whole 6 trts of TAC. 

Jo-Anne, hope your port installation goes well, mine went fine...I know it's there but thats about all i can say about it.  It was bruised and tender for a couple days but healed up ok.  Just feels like lump....yikes.....ya, in a spot that it shouldnt be.  Rest, relax, and recharge Junies.  HunkyD

otter

Stickerlady, don't be surprised if you end up needing something stronger than Pepcid Complete.  The hiccups are familiar--I had them during my first round of Taxotere/Cytoxan, along with the most awful acid indigestion/gastric reflux I've ever had in my life.  As per my onco's advice, I was taking Pepcid AC twice a day, plus eating Tums or drinking Gaviscon (basically the same combination as what's in Pepcid Complete).  It didn't help at all. Pepcid, like Zantac and Tagamet, blocks histamine (H2) receptors in the stomach.  That's supposed to decrease acid production, but it didn't do enough for me.

For the next cycle, my onco suggested that I try a proton-pump inhibitor instead of an H2 blocker.  So on day 2, I started taking omeprazole, which is the generic version of Prilosec.  Both Prilosec and omeprazole are available OTC.  It's the same type of drug that's in Prevacid, Nexium, and Protonix.  They are all used for serious gastric problems, like gastric ulcers and esophageal reflux disease. My onco told me to take 2 of the OTC omeprazole tablets (20 mg each) once a day.  That's double the usual OTC dose, but it's the dose often used for prescription Prilosec.

That strategy worked pretty well for me, except for occasional days when my stomach still felt a little "burpy".  I chewed a couple of Tums those days.

Hope this helps.

otter 

GramE

HI again. Thank you all for telling of your side effects and what works. I am curious, did the Dr say to take tums, since it is otc med?



Maybe I already posted this, - pre chemo brain, as I will start AC dose dense on Thursday, the 19th. My onco explained that chemo attacks ALL rapidly dividing cells, such as cancer, and everything from the mouth to the anus. In other words, the digestive tract and stomach and bowel become quite irritated. Since I do not have first hand experinece - yet -- I am not going to speculate on what happens to me. I was glad to hear a reason why it happens. AND, the reason to eat ice chips during chemo is to numb the mouth, so those cells dont get killed off quickly.



Today I think I got all the rest of the supplies I need or think I want to have around - digital thermometer, salt and baking sode for mouth sores, hand sanitizer, flushable wipes, yogurt ( I actually like it), pudding cups, popsicles, and a couple of frozen dinners, instant rice and applesauce. Soup and crackers are always in my cupboard,



Since I live alone, I want to have everything on hand and not have to keep phoning people to bring me this or that. And on a happier note: I went to bingo tonight and won 3 times... It will almost cover the copays for all the tests I have had to do. A friend of mine sent a feel good package: a teddy bear w/bc logo, a pink pen, and a HUGS magnet. It actually made me cry, because she was like a mentor for me after my husband died. She keeps on taking care of me, even though it is 5 years since my husband died. She lives in Florida and I am in Virginia, so we dont see each other much.



I know we all can beat this nasty cancer and if will be a rough journey, maybe some detours also, but it is "doable". No one said we have to like it either. Good Luck and God Bless.

otter

Yes, my onco said it was OK to take Tums, along with everything else.

otter 

Stickerlady

OH my goodness, I am having the worst throbbing pain in my arms and it goes down my spine. It  started at 5 a.m. and it is Sunday morning.  I got up and took a Vicodin with a bowl of cereal. Has anyone had this throbbing pain? Could I be having a heart attack or is this part of the treatment SE?  I live in a small town and don't like either DR. here. I hope this Vicodin kicks in soon. This is Scary. How do I know what is normal? Yesterday I had such a great day and now today this. Does anyone know if throbbing pain in the arms and back normal?

wondering7

Hi ladies. Hang in. I get my next chemo July 1st. Just posted a neulasta report on tips page. I think I can do this!!!W7

hunkydory

Stickerlady?

You doing OK?  Hope your pain meds knocked that SE out the door and you are doing better.  HunkyD

Stickerlady

It is coming up on 6 hours since my last Vicodin and I need another. It is a throbbing pain in my spine and arms and legs too. I fly to Anchorage tomorrow for blood work and to see my surgeon so hopefully I will get some answers. I hope this is all normal. I worry I have something go wrong here and I don't want to go to the ER. I would think my DR. here would call the Oncoligist right? I want the Oncoligist treating me not the MD's here.

KKing

stickerlady... I really don't know what is causing your pain.  Can you not call the oncology department and talk to the doc or a nurse???    I hope your pain goes away quickly...

Karen

KKing

my only other thought is if you did get the Neulasta needle to up your white blood count... a side effect of that is bone pain??

otter

Stickerlady, I hope you've called the on-call onco by now.

I do think it's probably the Neulasta shot, though.  Am I correct in thinking that you got your first TC on Monday (6/9) and you had a Neulasta shot the next day (6/10)?  That would make this 5 days after your Neulasta shot, and day 7 of this chemo cycle.  That's right about the time your wbc might start to go down.  I was told the lowest point with TC would be days 10-14, but I'm betting we can get a drop from the Taxotere that's even earlier.  Once your wbc starts to drop, the Neulasts shot kicks in ... and then you get bone pain.

My worst Neulasta pain was after my first TC tx.  The pain was most severe around day 6 of that cycle, but I got my shot on the same day as my chemo; so you're right on schedule.  I characterized the pain as a "sharp, stabbing pain," and that was no exaggeration.  It moved around somewhat, but was strong in my back, hips, thighs, and upper arms.

That's what my money is on, but you should probably call the after-hours number they undoubtedly gave you and describe your symptoms.  It's awful, I know.  The good news is, mine wasn't nearly so bad with the other 3 treatments.

Hugs (gently),

otter

[Note added in edit:  Once it's clear that you're not having a heart attack, it might help to know that my onco and her nurse both recommended mild exercise to relieve the bone pain.  Sounds brutal when you hurt so bad, but it does help.] 

mrscrj

I'm a little late on the comment but haven't been able to read the discussions for a few days. Monday (6/9) was my first chemo (AC) and had the same dull, nagging headache beginning that evening and continued until Friday. It was almost like a sinus headache. The only thing I took was Tylenol but that only made it a little better.  I've never had steroids before so don't know if that could have had any thing to do with it. Wed I go to the onc for a 10 day follow-up, think I'll ask.

One question back to anyone. How did everyone do with the Neulasta? I was told it could cause bone pain and there was some mild discomfort, but it was bearable.  

I am wondering if there is an accumulated effect from the chemo and Neulasta, making it a little worse with each treatment or if the chemical gets out of your body enough for the effects to carry over and/or increase with each treatment. 

ewesterman

Jo,

Good luck in chemo tomorrow. You will be fine. From one of the women in the May thread. We all wish you well. 

lauriella

Hello everyone, Add me to the June Chemo group.  I begin 4 rounds of AC on Tuesday, June 17, with 2 weeks inbetween each treatment.  I had a bilateral mastectomy after one excision and a re-excision, because the surgeon was unable to get clear margins.  This seems to be a characteristic of lobular.  Port was put in during re-excision surgery.  Drains were removed 10

 days later and then stitches removed on day 13 after surgery.  Mastectomy didn't really hurt but removing the bandages and stitches left me feeling like someone had sandpapered my chest. Vitamin E hand cream is helping.  I am apprehensive about Chemo but this whole experience has been "take it one step at a time", as I am sure it is for all of us.  One friend who has just been through all of this process tells me we will experience post-traumatic stress syndrome (PTSD) because everything happens so fast and we barely have time to adjust.  Your posts have all been very helpful and I'll try to be as informative with my experiences.  Thank you all for the information. 

lauriella

One question I have is regarding the headaches.  Has anyone tried Migrane medication for these?  I do get migranes and  had the oncologist send in a prescription so I have medication on hand.  Curious to know of anyone else's experiences with this.

Stickerlady

Otter, we called the Oncoligist at 12 noon and it is now 9 p.m. and still no call. I guess they expect you just to go to the ER on week-ends. I have been taking Vicodin but it only last 4 and a half hours and when I take it at the 6 hour mark it takes 2 hours to feel any difference. So I am in terrible THROBBING pain for about 3 hours. I felt so bad because my Mom called today from Connecticut and I forgot it was Father's Day. My Dad got on the phone and I burst into tears. I was in so much pain I didn't even want to talk to my parents who I love so much and don't want them to know how much pain I'm in. I hope I get some answers in Anchorage tomorrow. I lost it on my husband today because I can't drive and hurt so bad I don't know how I will get through tomorrow. He called and he has a Coast Guard Chief meeting me at the airport and he will be my driver to both my appointment s.

Otter, yes my first TC was on Monday and I did get the shot on Tuesday. I had pains like the real bad flu on Friday but today it almost feels like my vains are throbbing and it is in my spine. Well, I will write tomorrow and tell you how I make out. 

Stickerlady

It is 5:30 a.m. Monday and I slept 11-5 and the pain is gone!!! That was one intence day. I feel so much better today. I feel like such a wimp.  I fly this morning and hopefully get some answers today. Hope everyone has a good day.

texasmom

So glad to hear that you are doing better. Everyone was worried about you. It is hardest right after treatment. I'm on week two after first chemo and feel mostly like my old self with a few exceptions.

otter

Stickerlady, I'm so glad you were able to get a good night's sleep and the pain was gone this morning.  That is exactly what I experienced and was blaming on the Neulasta shots.  It's brutal, but it isn't necessarily the same with each treatment cycle.

OTOH, the alternative is to develop a fever and get very sick and end up in the hospital.  Unfortunately, this Taxotere/Cytoxan regimen I've been on seems to knock my bone marrow back even with the Neulasta shot.  I've developed a fever (100.4 or greater) during each of my last two cycles (#3 and #4), somewhere around day 11 or 12.  I often have a problem with sinusitis in the spring and early summer, and this year was no exception.  Usually, my family doc just puts me on guaifenisin and an antibiotic, and tells me to take ibuprofen.  This year I'm on chemo, so my onco rules.  I am taking Levaquin for the fever, but wasn't taking ibuprofen because I thought I wasn't supposed to.  Despite 2 days on the antibiotic, my temp went up to 100.4 at 3 a.m. last night, so I took 2 Advils.  I've also left a message for my onco's nurse to call me; I want to make sure I'm doing what I'm supposed to be doing.

Stickerlady, be sure to let us know how your doc visit goes today.  Feel better! 

otter 

Anonymous

Stickerlady, I am so sorry to hear of your pain. I can't imagine living so far from your oncologist. It must feel so frustrating. I am glad you are feeling better.

Today was my first tx of TCH. It was a breeze. No reactions to any of the drugs. I am still pumped up on Decadron. I am taking that the day before, day of, and two days after tx. I got four hours sleep last night, but will take Ativan tonight in order to get more sleep.

I get my Neulasta shot on Wed. On Wed, I have planned to do a Look Good, Feel better class, get my Neulasta shot, go to a nutritional counseling appt, and take a drumming class in the evening. It might be too much, but I'll see how it goes. 

My ex-not-quite-bf accompanied me today. I was such a motor mouth due to the steroid, he kept teasing me for babbling (I am usually fairly quiet). Finally, he left my bedside and went and took a nap in an empty infusion chair as I worked on my laptop. 

The nurse was far more encouraging than my onc about how I'll fare on treatment. My onc recommended AC/TH because she said I would feel more "wiped out" on TCH. In the end I decided on TCH. Well, today, the nurse said that in her experience women have fewer side effects on TCH. Let's hope she's correct. 

I had lost a lot of weight in the past few weeks and I took advantage of my tx time to snack on the free food (veggie sandwich, fruit cup, Odwalla bar, various kinds of teas). I am vegan (I don't eat or wear any animal products for ethical reasons) and I was pleasantly surprised that they had those vegan-friendly foods. "Dana Farber Cancer Institute: Come for the Food, Stay for the Chemo."

--Jo 

KKing

stickerlady 

So glad you are feeling better.

Jo... glad everything went so well for you.  Hope this all keeps up for you.

Lauriella.... welcome... sorry we have to meet this way.    Good wishes with the upcoming treatment.

Hope everyone is having a decent week

Karen

GramE

Lauriella, I think I have PRE traumatic stress syndrome... because my stomach is in knots, my appetite is off, and I am a nervous wreck with chemo to start June 19. I have rides lined up for two tx, but not for the port implant as yet. My son thinks he can take me June 30, so I am hopeful that will work out and I can proceed with #2 tx on Jul 3.



I have weeded out, sorted thru and organized my paperwork and phone #'s and gone over my supplies list a dozen times. Then I went to the store for bread and milk and forgot the bread... I live alone, so I have no one to blame for hiding papers and things but myself. When I put something in (at the time) what seems to be good place it seems I forget how good a place it was.



My son's mil is going to drive me for the first chemo on Thursday and we really dont know each other all that well. I am nervous that I will make a fool of myself with babbling on and on or get sick in her car.



Good wishes to everyone with treatment, lack of side effects and restful sleep.



Nancy

Donalee

Nancy,

You should be O.K. the first couple of days. Are you taking steroids the day before, day of, and day after? It seems the norm is, day 3 through day 10 are the worst. but everyone is different! this is just me and some other peoply I've been talking to. I was really anxious too and rushed to get everything don before my first, but I was O.K. those first two days, then the fatigue and indigestion hit.

Hang in there we'll be here to help and listen.

Donalee

Donalee

Nancy,

Drinks lots of water that is a major key to feeling better!!!

I never had a bottle of water out of my hands. As the taste in my mouth got worse I added tons of lemons to the water and it tasted better.

Donalee

GramE

Thanks Donalee. It is helpful to know this is "doable", but I do not have to like it. I actually slept great and am up and with a renewed burst of energy. And it will only be in the 80's, so I can take a walk without sweating buckets.



I posted this elsewhere, but I found some great head coverings and on Clearance at Sparkling Earth Products website. They have a vast variety of colors, styles and designs. Some for $ 3.99, which is much cheaper than other places.

SallyS

I started chemo last Wed., and I'm finally coming out of it today. I slept most of the time from Thursday through Sunday. Today, I'm feeling great so far. I had a Neulasta shot on Friday with no bone pain so far! My biggest problem seems to be mouth sores. Ouch! I don't have another treatment until next week, so I'm going to enjoy the time between now and then!

wdornan

I started chemo TC about 11 days ago. I have been relatively pretty OK. I developed neutropenia last week and have had several injections of neupogen. My bone pain was not bad, took three tylenol and it went away. Maybe some of you should suggest neupogen. The drawback is that you have to get at least weekly blood tests, but the pain is really not bad. Also, the WBC is at it's lowest 8-11 days follwoing chemo and then begins and rapid raise back. Normal range for WBC is 4.6-10.9. Mine was 1.5 ! After a couple of days it's at 5.7.  

Donalee

wdornan,

What is neutropenia? I've never heard of it?

Donalee

otter

Donalee, "neutropenia" is a low neutrophil count.  Neutrophils are the main type of wbc (white blood cell) that fights bacterial infections, and they're also the type of wbc that takes the greatest hit from chemo.

Neupogen and Neulasta ("neu"--get it?) are two synthetic versions of a neutrophil growth factor that the body produces normally to stimulate neutrophil production by the bone marrow.  When the chemo drugs kill off the immature neutrophils in our bone marrow and we become "neutropenic", we are very susceptible to bacterial infections that normally wouldn't be able to gain a foothold.  The Neupogen and Neulasta shots stimulate our bone marrow to make more neutrophils, more quickly...hopefully restoring them to normal numbers before we can get sick.

otter 

texasmom

It is about day 14/15 after first treatment and, just as predicted, I found that I have begun to lose my hair. It looks to be a gradual loss but I was afraid it would suddenly come out in clumps so I got my husband to buzz it before he left town on business. I wore a wig to work and it was the news of the day. Not too bad but without the wig it looks absolutely terrible because it isn't all gone but is very short and prickly. I wonder how long it will take for it all to come out.